Pages

Tuesday, February 10, 2015

I am oh so glad to see the anti-vaccination movement finally seeing
some serious public blowback, and very, very sorry that it has taken a
lot of sick kids to do it. And alternately thankful at writing like
this (Vaccines Don’t Cause Autism, But That’s Not the Point. Stop Being Ableist.) being all over my Facebook feed, and ambivalent about some of its logic. (It is still well worth reading.)

If vaccines caused autism, even in some tiny percentage of vaccinated
children, then whether the tradeoffs were worth the risk might be an
ethical discussion worth having. (In which I would still give a hell of a
lot of weight to “Measles encephalitis will straight up kill you,
autism won’t.”)

But it isn’t. Vaccines don’t cause autism, period.

A hypothetical situation: If there were some form of medical
treatment that carried a risk of turning me non-autistic, I would be
deeply hesitant to take it, whatever the risks of not taking it were.
Not because I think being non-autistic is the worst possible fate. The
experience of the 90% or so of people I know who are non-autistic
suggests to me that being non-autistic is not the worst possible way to
go through life.

But that’s not why I wouldn’t want to be non-autistic. It’s because,
as the neurodiversity movement has gone to great lengths to attempt to
communicate to the neurotypical majority, the patterns of how we
innately experience the world on a neurological level are intimately
entwined with our identities as people.

I don’t know what about being non-autistic is so compelling to
non-autistic people. I don’t know how many of them could even articulate
what it is if you asked them, but they seem attached to it, and as
someone not sharing that experience, I don’t get to assume that they are
wrong to be so.

Likewise, if there were some form of medical treatment that carried
the risk of turning a gay kid straight, I think we would rightly express
serious ethical concerns about that possibility. Not because being
straight is the worst possible thing that could happen to a person. But
because, as the gay community has spent decades trying to tell us,
sexuality for most people is as intrinsic to identity and their sense of
personhood as things like gender, ethnicity, language, or spirituality
might be.

Try it: If you’re cis-gender, would you readily embrace some kind of
medical intervention that, whatever its positive effects, carried the
potential side effect of turning you into a member of another sex or
gender? Even if you chose to accept that treatment because not dying was
worth it to you, would you do it with no sense of fear or conflict?

Why not?

Because the fact that being autistic or not, a man or a woman, gay or
straight, cisgender or transgender, isn’t a bad or wrong thing unto
itself is kind of beside the point when we’re talking about altering
deep-seated characteristics that are so profoundly tied to our
identities.

If vaccination could cause autism, even if we overwhelmingly decided
for good reasons that the tradeoff was acceptable, that would be
something we’d have a responsibility to know. It’s not because it
doesn’t. In fact, a great deal of research has been dedicated
to finding out whether vaccination can cause autism, and I’m resentful
of that not because autism isn’t something that should be feared (though
it isn’t), and not because Andrew Wakefield turned out to be wrong, but
because he committed fraud and every variety of ethical malfeasance and
objectified autistic people in the process, for personal gain, with no
remorse whatsoever. Being wrong and eventually discovering that you’re
wrong isn’t a sin, scientifically, but that’s not how we got the myth
that vaccines cause autism. It wasn’t just bad study design or
misinterpretation of data, it was a knowing act of fraud and selfishness
that set both acceptance of autistic people, and public health, back by
decades.

***

And don’t get me wrong—I am really appreciative and glad to see so
many of my friends, so many writers and bloggers that I respect, going
“You know what, I would really rather my child be disabled than dead. I
would really rather have a living autistic child.” Because it’s still
commonplace for parents not to feel that way, and it gets kids
mistreated and killed.

But the thing is, the two things aren’t connected. You’re not
risking your child becoming autistic by getting them vaccinated, because
there is no relationship between the two things. And I’m honestly a
little uneasy about reinforcing the link in people’s minds at all
by saying “Of course I’d take the chance of my child becoming autistic
to protect them from life-threatening disease,” because you’re not taking that chance.

Vaccinations don’t cause autism. And autism isn’t a death sentence. And those facts are unrelated.

And whether autism is a horrible affliction or an expression of human
diversity with advantages and disadvantages like any other, has nothing
to do with whether it’s okay to make autistic people boogeymen or
rhetorical pawns, because the answer is “no” regardless.

Let’s take another example, of something that is generally agreed,
including by the people who have it, to be pretty awful, like ALS,
Parkinson’s, or Alzheimer’s disease … all of which are also not caused by
vaccination. Would it be any less wrong to fearmonger about vaccines by
using a popular fear of something that is pretty awful in its own right?

No—the people coping with that condition deserve just as much as
autistic people not to be made pawns in an ideological skirmish, to not
have their lives and struggles be made the symbols of somebody else’s
irrational fears.

Would it make any sense to say, “Vaccines don’t cause Parkinson’s, but anyway, Parkinson’s isn’t the worst thing in the world?”

Because here’s another thing—you can run the risk of being ‘splainy
to someone who has less positive feelings about their own condition.
Autism isn’t a degenerative and pretty much universally loathed
condition like Alzheimer’s or Parkinson’s, but there are
autistic people who really hate it. Who attribute a great deal of the
pain in their lives to autism, who wish they weren’t, who would take a
cure if one were available, who really feel that it is the worst
possible thing to happen to them.

Usually when I talk to these people, I
have to question whether it’s the difficulties of autism itself that
makes them feel this way, or years and years of being mistreated for
being autistic, which can be a very difficult distinction to make when
you have no standard for comparison. But sometimes it is the former and
not the latter of those things, and ultimately people have a right to
feel the way they do about their own lives. I hope that they come to a
better place eventually, but they also have a right to do that on their
own time and in whatever way they need to, not by being told by someone
who doesn’t know anything of their experience that they should just
accept it.

And they still deserve not to be made objects of fear in the wholly
irrational campaign against vaccination…because whether a subjective
experience of autism is the worst thing in the world or not, is
logically, factually disconnected from whether or not vaccines cause
it…and they don’t.

Something else that actually happened: A few weeks ago, after the
release of a Danish study purporting to establish a link between
circumcision before age five and development of autism, a Facebook friend
of a friend said something along the lines of (I’m paraphrasing)
“Obviously it’s totally ridiculous, but if it scares people out of
circumcising, I’m all for it.”

Which to me was actually far more offensive on its face than the
persistence of fear that vaccines have anything to do with autism. Because that’s not just an irrational fear; that statement expresses a
conviction that it’s okay to choose a group of people and use our
existence as a scare tactic for your own ends. That if a group of people
is presumed sufficiently voiceless, you can strip them of agency and
the right to self-representation and use them to promulgate a falsehood
that’s convenient to your own beliefs just because it’s easy.

(I don’t actually have a lot of blame for people who admit to still
being afraid even though they rationally know that the connection is
unfounded. Certain people and certain organizations have spent a lot of
time, money, and effort to make them afraid.)

In this, it doesn’t matter how sympathetic I am to the cause of
pushing back against routine, medically-unnecessary procedures on
newborns. It doesn’t matter how good I think that or any other issue
is. We are not your rhetorical props. We are not your scare tactics.
Our wellbeing and acceptance as full and not defective or broken human
beings are not your pawns for whatever your own pet cause is, no matter
how good unto itself it might be.

There is one more way in which the anti-vaccination movement puts
autistic people at risk that I rarely if ever see mentioned, and it’s
this: Vaccination protects autistic children, too, not just non-autistic
ones. Non-autistic children are not the ones who need and deserve
protection from preventable disease while autistic children are the risk
we run to do so. Further, most people at this point know that autism
involves communication difficulties by definition, but what is less
well-known is that autism often involves particular difficulty
in communicating about pain or illness or other things involving body
awareness. Also that pain or illness can take a particularly high toll
on the communication and coping abilities of autistic kids compared to
other kids. Autism is a complicated disability, and one thing that an
autistic kid doesn’t need on top of everything else that they are
dealing with—is the measles. The anti-vaccination movement treats
consequences to autistic lives of preventable, serious illnesses as a
non-issue (and the lives of immune-compromised and medically vulnerable
people as utterly disposable, but that’s a whole other essay).

I actually find “Vaccines don’t cause autism, period,” to be a
perfectly acceptable assertion. If you do feel the need to add an “and
furthermore…,” some things to go with could be “Vaccines don’t cause
autism, and vaccines also protect autistic people, whose lives count as
much as yours,” or “Vaccines don’t cause autism, and autistic people are
not appropriate scapegoats for your fears, so stop it.”

Sunday, February 8, 2015

I see lots of campaigns to raise "awareness," but very few to raise "acceptance."

Some issues you may just want to raise awareness about, like signs and
symptoms of certain diseases, when to see a doctor, etc. When people
become "aware" of something, it is not an act or a choice. They just get
information and become "aware" of it.

"Acceptance," on the other
hand, is more personal. People may be "aware" of autism, but may not be
"accepting" of Autistic people for who they are (hence,
assuming the need to "cure" them). People may be "aware" of LGBT/Queer
people, but they may not "accept" them, especially being "openly gay" in
public spaces. (Guess how many times I've been called a 'faggot' just
for holding hands on a date??)

"Acceptance" involves a choice, and leads to action. Do you "accept"
people for who they are, or are you simply "aware" of them?

Acceptance campaigns also involve risks. Typically those advocating for
"acceptance" are having to do so because they are NOT accepted, and are
met with hostility for seeking acceptance.